3 Years and an Update

Today Eden is 3! When she was born, I wasn't sure we'd see this day. When the doctors said they didn't believe that she would live beyond infancy, I didn't know what infancy meant- maybe a year, two, even 3? 

The truth is that her birthday is always a little hard- the memories of her birth and the shock, sadness, and grief that surrounded those initial days. And then the present reality of a child that hasn't changed one bit or reached one milestone (besides smiling!) since she was born. It's not the fact that she isn't reaching milestones that makes birthdays hard, it's that she can't enjoy any of the fun things that make birthdays with kids so special. She can't see the balloons or taste the cake or delight in the presents. And that feels hard on special days like birthdays. 

This year I've really tried to reframe my thinking though and focus more on the celebration of her life- who she is, not the loss of who she might have been. And to take time to think about the kindness of God in giving us Eden, and in giving us 3 years with her. As I was thinking about this the other night, two words came to mind: joy and gain. 

It is a great JOY to care for Eden. I think of the verses "whatever you do for the least of these, you do for me" (matthew 25:40) and "it is more blessed to give than to receive"(acts 20:35). Eden's complete helplessness and intense care make the truth of these verses so sweet. The joy doesn't come at all from what she's giving back because she can't give anything back (though her occasional smiles do light up our days!), it comes from God and serving God in this role that he's given us. 

It has also been great GAIN to our souls to have Eden as our daughter. How else could we begin to grasp the utter brokenness of the world and the far reaching effects of the curse than to see Eden suffering everyday through muscle spasms, seizures, feeding intolerance, tight muscles and joints, and a host of other things most of us will never face. How else could we begin to come to terms with our own mortality and the mortality of the ones we love than to have such a fragile one living amongst us? In our family, we talk about death and the precious promise of Jesus' return probably every week. I don't think we would've been like that apart from Eden. 

There are so many things I'd love to share- I always thought I'd write a few blog posts called "Lessons from Eden". I'd share as much as I could of all the ways God has used her precious life to change me and our family. Time doesn't allow for that today, but I'll end with a couple quick stories from just yesterday.

On our way to swimming lessons, Eden started to shift in her car seat. Maybe I didn't have the straps tight enough, but either way, her lack of trunk support caused her to basically fold in half. She was coughing and there was mucus all over her arms and face. Without being asked, Josiah got up from his seat, repositioned her in her car seat, completely wiped up all of the mucus and got her situated perfectly. Josiah said, "Mom, I got her all cleaned up and I fixed her in the seat. She looks better now, doesn't she?" 

And then later that same night while I was giving Eden her medicine, she started to cough and began to vomit. I flipped her over my shoulder so she wouldn't aspirate. Just as she was beginning to vomit, Jacob walked in the room and said, "Mom, her suctioning machine!" He grabbed the suctioning wand, I turned on the machine, and he held her head gently as he suctioned the vomit from her mouth. 

Some people might feel bad for the boys hearing those stories, but I couldn't be more proud or thankful. No amount of soccer goals or good grades could compare with boys who are growing in their love and compassion for helpless ones, like Eden. And that's just one of the ways I've seen growth in them. One of my prayers since the beginning has been this: God, don't let us waste any part of this. Accomplish every bit that you intend, in my life, in Don's, and in our boys as well. We don't always see the answers to those prayers, but we do get glimpses now and then. And I'm just so thankful. 

When people see our family (and we tend to stick out), I'm sure they see loss, but I wish they could step inside and feel the joy and see the great gain she has been to all of us. We're the *lucky* ones. 

**** I'm sure many of you are wondering how she's doing and the truth is she's doing ok. Nothing has really changed over the past year. She still has seizures, she still doesn't sleep much, she still needs a lot of suctioning. Her body has grown bigger, so her scoliosis is worse and it's harder to get her arms and legs to stretch out due to the tightness of her muscles and joints. She's on a lot of medication and most of those meds have increased greatly over the past year. So is she better or worse? She's worse, but we've been able to maintain some stability for her by constantly increasing her medication. One huge blessing of the past few months is that we were approved in January for nursing care and medical assistance from the state. She received a waiver for medically fragile children that allows us to get a ton of nursing hours that are covered by the state and now all of her medical expenses (outside of what insurance covers) are also paid for by the state. This has been HUGE for us and we are so thankful. We currently have 3 wonderful nurses that work with Eden giving us some respite 4 days a week and 4 overnights a week. ****